Celebrities and Rheumatoid Arthritis

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Two Miss Americas

Last week, I was so excited when I ran across an article about Meredith Boyd, a former Miss USA contestant and Mrs. Georgia International. But it wasn’t her beauty and poise that fascinated me. It was her support of the Arthritis Foundation and her own Rheumatoid Arthritis…

Some of you know that two of my children are deaf. When my firstborn got her first hearing aids at age four, Heather Whitestone had just become the first Miss America with a disability. I cried the night that she sang and won the pageant – she is deaf. What an inspiration she was to me and my daughter and to deaf children everywhere.

Wherever we went for hearing aid adjustments or speech therapy, we saw taped up pictures of Heather Whitestone. People were cutting out every article they could find to say: LOOK! Miss America is deaf. We are not alone.

Searching for a Rheumatoid Arthritis Celebrity

So many times, I have heard people with RA say: We need to find our celebrities. We need them to speak out about having Rheumatoid Arthritis. That is why I jump to read every article about a famous person who has RA.

This weekend, a friend tweeted about the Rheumatoid Arthritis of a Hollywood star. I flew to the full article. Who is it?  What’s she saying about it?

I think several of us went and read it all at once because we shared the same reaction: disillusionment. Here is how the People magazine article about Camryn Manheim ended:

According the People writer, Camryn says, “I play racquetball… swim… rollerblade… ride bikes… hike… play guitar. I feel great. You know, the thing is you have to get the proper diagnosis and then you can get the proper treatment. Then you can put it (Rheumatoid Arthritis) behind you and live a full and eventful life.”

I am glad that for some people RA is like that. But I don’t know many. I don’t think I’ll be taping-up that magazine story.

Help Wanted ad: Celebrities to represent

I have never been much for celebrity. I don’t read People magazine. I’m more likely to read Woman’s Day. At least I used to be…

But I get it! I know why people with rheumatoid disease want a celebrity who understands them to represent them to the world.  I know because I fell in love with Heather Whitestone for making my little girl feel capable and understood.

Next post on celebrities and RA: what can WE do?

Celebrities and Rheumatoid Arthritis, Part 2

“Dealing with RA Is So Much Easier than Lupus” –Kathy Lubbers

Read the People magazine article for yourself.

You will love to read Heather Whitestone McCallum’s superb example of advocacy while she is just being herself in a brief interview in Audiology Online.  If you love her as much as I do, you might check out Heather’s website, too.

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

13 thoughts on “Celebrities and Rheumatoid Arthritis

  • October 5, 2009 at 4:43 pm
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    I’m in shock…”put it behind”. She has seriously done us wrong. I don’t believe Ms. Manheim has RA.

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  • October 5, 2009 at 4:44 pm
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    I agree, we learn to live with and adjust to the diagnosis, but “put it behind” doesnt happen with a chronic, incurable and progressive disease!

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  • October 5, 2009 at 4:45 pm
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    Don’t you think it’s great though to read about someone that has responded really well to her meds and is able to get her life back on track, she is very lucky that she has not had any joint damage and is able to do all the sports she describes. It’s a shame that she didn’t use this article to highlight the enormous impact RA has on our lives but she can only speak about her own experience. It highlights once again what an enormous difference there is in peoples experience of living with RA.

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  • October 5, 2009 at 4:45 pm
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    Don’t forget everyone experiences RA differently and there is also different levels of RA, some cases are only very mild, some cases moderate, some moderate to severe, and others severe. Plus as Elizabeth stated, we must also understand that she has obviously responded well to her meds. and not had joint damage.

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  • October 6, 2009 at 7:18 am
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    I thought about this a lot yesterday. I have to wonder if this is a “People Spin”. It could be, as Elizabeth said, she responded really well to her treatment and was positive about it and they used journalistic license to spin it as having put it behind her. If not, I am terribly disappointed in her.

    That said- I would rather she be open and positive about HER treatment and get it out there than be like some of the other celebs who have hidden it from the world. Look at Kathleen Turner. She endured years of accusations of drug abuse and alcohol abuse, years of slams about her weight ballooning (as a “former” sexpot) and not until recently did she admit that during that time she was undergoing agressive treatment for RA. What was she ashamed of? Was it MORE acceptable in her eyes to be called fat, a drunk or a junkie than to admit that she was battling RA?

    I, for one, would rather stand up and proudly fight. I would rather use any questions as an opportunity to educate. I would rather shout it from the rooftop than hide in the shadows embarrassed because my body is betraying me.

    I would rather hear how wonderfully Ms. Manheim’s treatment worked for her and take hope in that- than have someone who is ashamed of her disease as “our” voice.

    Reply
    • August 13, 2013 at 12:46 pm
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      I was just recently diagnosed. I have not told many people. Why? Because I don’t want to be treated differently. I don’t need a pity party. Though I agree with most of what you wrote, I think it wrong to be upset with Ms Turner. Telling the world does not change the facts, maybe she thought it would hurt her career, who knows. I think it is a personal choice who they tell. When I got FMS, I told everyone and was treated like it was all in my head because they couldn’t “see” my illness. Now that I have RA, I feel it is my own personal battle. I have told my immediate family because they need to know why I am grouchy. Not to pity me, not to let my RA be an excuse to be grouchy but so they know that if I am being grouchy it is not because of them and not that I don’t love them.

      Reply
  • October 6, 2009 at 9:31 am
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    I just ran across your blog and love it! My daughter has JRA and was fortunate to have met Meredith Boyd at the Arthritis Walk in Atlanta this year; my daughter still talks about meeting “Miss Meredith” and wants to be just like her when she grows up. I sure hope so! I wish there were more celebrity spokespeople out there for kids with arthritis to look up to. Meredith made a point to take the time during her busy schedule to meet with us and listen to my daughter’s story (among the other hundred kids there to meet her) and that is something she holds near and dear to her heart. She took the time to listen and that is the best gift anyone can give a child with arthritis. Meredith is definitely more than just a beauty queen, she is an amazing role model and I know it took a lot of courage for her to be so candid and share her personal story with arthritis to the world. For us, we are so grateful for everything she does for the Arthritis Foundation and especially the kids affected with this disease.

    Reply
  • Pingback: Patients for a Moment #10 « DUNCAN CROSS

  • November 2, 2009 at 6:38 am
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    I haven’t seen any recent articles, but Kathleen Turner also has been written about having RA. That was a pretty good article.

    As for the put it behind her statement of the one lady, I can’t fault her for saying it. Woudn’t we all like to be able to put it behind us? If that is her attitude and what gets her through the day then more power to her.

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  • July 5, 2010 at 9:56 am
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    Paula Abdul would be a great place to start.

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  • March 19, 2012 at 2:41 pm
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    Thank you so much for this interesting information!
    I want to comment on the following though:

    Camryn says, “I play racquetball… swim… rollerblade… ride bikes… hike… play guitar. I feel great. You know, the thing is you have to get the proper diagnosis and then you can get the proper treatment. Then you can put it (Rheumatoid Arthritis) behind you and live a full and eventful life.”

    I know the severity of RA is different for everyone. I was told by my wonderful, very experienced RA DR when I asked her if everyone who diagnosed with RA has to be on either chemo drugs or biologics. She said to me that if patients RA is not severe she wouldn’t put them on such harsh drugs. But b/c my RA is very severe/advanced, I must be on such drugs.
    Being on all possible treatments during last 5 years, I am suffering 24/7 with pain, swollen joints, glands, fevers, so tired that get up from bed is a big deal to me, and so much more. I used to be very athletic, active and fit person, and now I cant live my life like I wish. I pray to God every day that maybe tomorrow I’ll feel better for my husband’s or kids birthday, that I will be up to cook and bake something special for them, but I can hardly do what i have to do. Despite strong pain meds, despite all treatments.

    I have a question now; how Camryn, can stay so active? How can she move her limbs so easily to perform all these activity? Is this means that she has mild case of RA and if yes, why would she be on such treatments than?

    I am so sorry for all these questions. I am very intelligent person, who does a lot of research, who reads tons of materials and who despite pain and exhausting, despite damaged joints/ligaments/cartridge/ tendons/lungs/heart/ eyes/ and many-many surgeries still tries hard to have some life quality. But more I search – less answers I find; I don’t know why when it comes to RA so much unknown, why each case is so different and most RA doctors have such different views on treatments, disease itself?

    I don’t know why some people get relieve from treatments and why someone like me, dont get any relieve or help from them? How can someone with RA can say to “put RA behind you and live normal life”? Don’t we all want that, but a lot of us can’t do that not b/c we are not ambitious, or lazy, seeking pity, etc. But b/c this disease “eats” our strength, it makes life so hard, so painful that when you look in a mirror, you cant recognize the person we see…

    Good for people who can do all these active things, I am so happy to hear about them living life to fullest. Keep living great life! Last year I read that as much as 15% of RA diagnoses in US end up to be not RA at all. They wrote about false diagnoses for MS patients as well. It said that a lot of patients were on unnecessary treatments, and after all it wasn’t RA at all. And that they believe that % a lot higher for false RA diagnoses, but many people have no idea about having same issue.
    My RA told me that this is true, that RA is not an easy condition to diagnose and unfortunately many Doctors give RA diagnoses for someone who has running nose. 🙂

    Thank you for listening
    Wishing you all to live a happy life!

    Linda

    Reply
  • August 13, 2013 at 12:33 pm
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    I don’t know what stage Camryn Manheim is in, but it can’t be the stage I am in. Sure I make myself do things like mow the lawn, play badminton, etc, but do I feel great? No. I hurt whether I exercise or not. There are days I cannot move. Getting out of bed is the hardest part of my day. Getting dressed is the next step. I know I will never work another job, the energy is just not there. Once I am dressed I can conquer my day. Well what I consider conquering. I take my victories wherever I can get them. Once I start moving around and keep moving it isn’t so bad, but once I stop, the day is over as far as getting anything done.

    Reply
  • December 24, 2015 at 12:45 pm
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    Kathleen Turner, James Coburn, James Earl Jones, to name a few. Kathleen Turner does speak out about R/A. She was always so beautifu. Still is in my opinion. Says meds caused her face to change and I certainly know how she feels. Merry Christmas to all my warriors and may the new year bring better health and new tratment options. Love and kisses.

    Reply

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